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University of Utah Center of Excellence in ELSI research (UCEER)

犹他大学 ELSI 研究卓越中心 (UCEER)

基本信息

批准号：
10632012
负责人：
ERIN ROTHWELL
金额：
$ 99.13万
依托单位：
UNIVERSITY OF UTAH
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-05-16 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10632012
关键词：
Address Administrative Efficiency Advisory Committees Affect Award Cancer Center Planning Grant Career Mobility Characteristics Child Collaborations Communication Communication Tools Communities Companions Decision Making Development Disabled Children Discipline Discipline of Nursing Discipline of obstetrics Education Educational Activities Educational Assessment Faculty Family Family Relationship Forensic Medicine Funding Genetic Genetic Counseling Genetic Diseases Genetic Screening Grant Healthcare Individual Informed Consent Institution Laws Leadership Legal Link Mentors Mentorship National Human Genome Research Institute Neonatal Screening Newborn Infant Pediatrics Philosophy Policies Population Population Scientist Supplement (R25)Postdoctoral Fellow Process Productivity Public Health Research Research Activity Research Personnel Research Project Grants Resources Schedule Screening procedure Structure Students Testing Treatment Effectiveness United States National Institutes of Health Universities Utah Woman Work career career development carrier testing college cost effectiveness disability ethical, legal, and social implication experience family support father role genetic technology genetic testing graduate student health communication health disparity health literacy implementation science improved legal implication meetings member patient screening policy implication population based prenatal prenatal testing programs response screening screening services social social implication undergraduate student

项目摘要

PROJECT SUMMARY This application is for renewal of funding for the Utah Center of Excellence in ELSI Research (UCEER). Our Center has received funding under a P20 grant from 2014 – 2016 and under an RM1 grant from 2016 – 2020. UCEER is primarily focused on ELSI issues in population-based genetic testing and screening. For the current funding cycle, UCEER has had a strong emphasis on newborn screening, prenatal screening and carrier screening. For this renewal, we propose extending this focus to also address issues with genetic disabilities, including cost- effectiveness of treatments, adaptation and support within families and the community, and legal/policy issues. In addition, we propose to address issues arising from population-based heritage testing by direct to consumer genetic testing companies. We propose to maintain a robust set of efforts to involve faculty from a broad range of disciplines and students from the undergraduate to post-doc levels. UCEER has received a R25 award from NHGRI, linked to our RM1 funding, that supports undergraduate and graduate students who identify with a disability. UCEER has developed an efficient administrative structure and processes and a strong group of staff to support our research and educational programs.

项目总结此申请是为犹他州ELSI研究卓越中心续签资金 (UCEER)。我们的中心在2014-2016年间获得了P20赠款的资助，并在 2016-2020年RM1赠款。UCEER主要关注以人口为基础的ELSI问题基因检测和筛查。在当前的供资周期中，欧洲能源、环境和经济研究中心高度重视关于新生儿筛查、产前筛查和携带者筛查。对于此次续签，我们建议将这一重点扩大到也涉及遗传残疾问题，包括成本效益问题家庭和社区内的治疗、适应和支持以及法律/政策问题。此外，我们建议处理以人口为本的文物测试所引起的问题。由直接面向消费者的基因检测公司。我们建议保持一套强有力的努力让来自广泛学科的教职员工和从本科生到博士后水平。UCEER已获得NHGRI颁发的R25奖金，与我们的RM1资金有关，这为认同残疾的本科生和研究生提供支持。UCEER有制定了高效的管理结构和流程以及强大的员工团队，以支持我们的研究和教育项目。

项目成果

期刊论文数量（40）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.

沟通不确定性对公众对精准医学研究反应的影响。

DOI：
10.1093/abm/kaab050
发表时间：
2021
期刊：
Annals of behavioral medicine : a publication of the Society of Behavioral Medicine
影响因子：
0
作者：
Ratcliff,ChelseaL;Wong,Bob;Jensen,JakobD;Kaphingst,KimberlyA
通讯作者：
Kaphingst,KimberlyA

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.

对残留新生儿筛查血斑的存储和研究使用的缩短同意书的评估。

DOI：
10.1177/1556264617736199
发表时间：
2017
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
0
作者：
Rothwell,Erin;Goldenberg,Aaron;Johnson,Erin;Riches,Naomi;Tarini,Beth;Botkin,JeffreyR
通讯作者：
Botkin,JeffreyR

Previvorship Posting: Why Breast Cancer Previvors Share Their Stories on Social Media.

幸存者发帖：为什么乳腺癌幸存者在社交媒体上分享他们的故事。